Saturday, 15 April 2017

Broken: a new metaphor for CFS management

When I was about 15 I discovered that my bicycle was not only the funnest, fastest toy for mucking about on outside, or just the best way getting to the local newsagent to spend my pocket money on lollies, but also the most efficient methods for gaining independence both from my parents, and the rigid time table of the metro bus. 

I wasn't yet brave enough to ride on the road, so one day I was pootling along the footpath, on my way to Sandy Bay. I'd just reached the part where the road runs right next to the estuary and I was daydreaming, lost in watching the play of light and wind on the water, when my progress was brought to a jarring halt by the sudden appearance of a short, green post.

There was a sharp pain in my right arm and tears sprang in my eyes in the first few moments after the collision. But I didn't think it hurt enough to be broken. I picked up my trusty steed, and kept pedalling, albeit with one arm held rather gingerly, to the after-school sailing course, where I continued to learn about wind, waves and water, sails, keels, tacking and which ropes to pull. 

About a month, and plenty of sailing after the event my wrist was still aching, so my mum took me to get an x-ray, though I still didn't believe it hurt enough to be broken. A small fracture was detected, and my arm was strapped up in a nice fluorescent green plaster for the next 6 weeks. I was allowed to do my grade 10 exams typing with my left hand on a computer, and I got a free pass from having to do the dishes at home. On the whole, I thought the story was quite funny.

Here are some lovely sympathetic letters my friends wrote to me at the time: 

Soon after exams were over, the plaster came off, and I went on a life-changing end of year bush walk with some friends to Pine Valley. This involved 5 days of picking up heavy packs, scaling precipitous  mountains, falling over in the mud, and even a bit of rock climbing. Discovering that I actually liked bush walking, rather than regarding it as a boring hobby of my parents, changed the course of my life.

(Proud of myself after having fallen in a mud-hole up to my right-knee. 1998)

I can't remember how we discovered my arm was broken again after the trip, but it certainly wasn't due to me suspecting so! It was probably a routine check-up. Anyhow, I went back in another plaster (yellow this time), for 6 weeks, and then wore a rigid, but removable plastic support brace for months after that.

I still went bushwalking, plaster cast and all. 

Starting the Overland Track with yellow plaster cast (1998). 

On top of Mount Anne with plastic arm brace (1999)
Another lovely card from a friend. (Portrait of me bush walking with a broken arm and a silly hat and shirt)

Despite this, and much to my mum's relief, the bone eventually healed with the support of the cast, but, due to my recklessness, it took almost a year rather than 6 weeks.

So, what has this got to do with my current chronic fatigue syndrome (CFS), almost 20 years later?

Well, for one, it demonstrates that I might possess somewhat of a stubborn nature: an unwillingness to hold myself back from fun and adventures, just because I might be sick or injured. And secondly, I am currently using broken bones a new metaphor,  to try and manage my chronic fatigue.

When I got sick, just over a year ago, I have read that slow, careful pacing of activity is one of the only proven ways that people have recovered. And so I have been trying to do this all year, and failing.

Here is a very scientific graph that roughly shows the progress of my health over the year. 

The bad news is that I have been getting gradually worse. After each crash I never regain my previous level of functionality. But the good news is, that between crashes, I do get better, albeit at a creepingly slow snails pace. I interpret this as my body's miraculous natural healing powers coming into play, just as they do when you break a bone. (Check it out! So, if I can prevent the crashes, or, i.e. not stand on any snakes in the game of 'snakes and excruciatingly long and slow ladders' I may have a chance of getting better. 

As I wrote about in a previous post, (, pacing by 'feel' was not working for me, due to the most common symptom of CFS, which is PEM (Post Exertional Malaise). This means you don't receive any immediate feedback when you've overdone it. The sneaky, treacherous bugger waits a day or two before it completely knock you for six. 

Knocked for six. Me and my most CFS constant companions over the last year: the floor, an eyebag and a set of noise-isolating headphones. 2017

I thought I had it sorted when I received my new wrist pedometer around christmas time. Finally I could actually know how many steps I was doing each day, and make sure I didn't do too many! But it didn't work. On the second of January I suffered another prolonged crash into the pit of doom, and felt hopeless and despairing about ever gaining some control over this illness. The pedometer, of course, does not measure the type of steps you do – whether they are fast or slow, uphill or downhill, carrying a heavy weight or not. I am still not achieving the activity levels that I was capable of pre-crash, 4 months later. The consequences of over doing it are far from insignificant.

Despairing facebook post, January 2017. Sorry I can't remember which book the quote is from. 

A short while back, via a Facebook support group, I discovered a new technique that people have been experimenting with to manage their CFS. It involves constantly wearing a heart rate monitor, and making sure your heart rate always stays below a certain level. That level is one that is low enough to prevent you from ever using your cellular anaerobic respiration system. Although I don't fully understand the biochemistry behind it, the theory is that the aerobic energy production mechanism in the cells of CFS sufferers is broken (if you remember high-school science, this process occurs in the mitochondria, which are small organelles inside our cells, where glucose and oxygen get together to produce usable energy, and carbon dioxide as a by-product. If we exercise so hard that we use up all the oxygen in our cells, then anaerobic respiration kicks in. This is much less efficient, and produces lactic-acid as a by-product, which is what makes your muscles burn and for you to ramp down the exercise intensity level or stop for a breather pretty soon!). The theory is, that with CFS we reach our anaerobic threshold much more quickly than a healthy person, and that's why we can't do very much, and why a very small amount of over-activity can knock us out for days or weeks. 

The damage to our cellular respiration system was most likely from a virus, or a combination of viruses or other stresses, but as this is a vastly understudied disease, that until very recently has been regarded by many in the medical profession as psychosomatic, nobody really knows. (By the way, there are now many studies that prove CFS is 'real', and about bloody time. For example: 

So this is how I'm now thinking about it: Something in all of my cells is broken, just like the bone was in my arm. But because my symptoms were initially just a weird feeling, and didn't hurt or weren't visible, I have been pushing myself through and making it worse, just as if I had been walking on a broken bone. 

Everybody has a different anaerobic threshold, which require a special test to find out. Depending on how old and how fit you are, a general rule of thumb is that it is between 65 and 95% of 220 minus your age. If I play it safe and aim for 60%, then that is 111 beats per minute. So I am now regarding 111 beats per minute as the plaster cast that I have to wear. 

This involves doing things very, very slowly – much more slowly than I would do intuitively. I have breaks when walking up a flight of just 5 stairs. I don't hang out my laundry all at once, but I have little sit downs in between. I sit down on boulders when walking slowly along the beach. I sit down immediately if my HR goes above 110. I walk up small hills, backwards and slowly, with my focus on the view, not on my destination, having frequent breathing breaks. 

Its been 3 weeks and it seems to be working. I haven't crashed and my head is much clearer. Touch wood. Because I've been this well before, and crashed hard again. But that was before the knowledge of heart rate monitoring.

There is hope also, that if this method works, and if scientists discover a simple way to test for CFS (which they are working on -, then people can heal a lot quicker, by 'plaster casting' themselves early on. 

Maybe. There are still a lot of unknowns.

But now, my hope levels are rising. Which is also a cause for concern. My hope always rises when I start to feel better, which makes it more emotionally draining if I crash again, and possibly more likely that I'll take risks and push myself too hard. Its only been 3 weeks. Many things could change. Unlike a broken bone, I don't have any science to guide me in to how long I should wear this 'plaster cast' for, and what are safe risks to take. You can't X-ray your mitochondria, so I'm guessing all the way. And the consequence of accidentally crossing my boundaries could be months or years more in 'the fatiguey pit of doom'. That's where I have to do more of the 'listening to my body' gizmo, that sounds so easy, but is so bloody difficult. I need to dramatically err on the side of caution, which is hard, when I am so desperate to start my life again, and I am not pinned to my bed by my symptoms. Plus there are other stresses that could knock me back regardless of all my careful pacing, such other viruses or bacterial illnesses. I'm far from the all-clear. But my head is unfoggy enough to write my first blog post for a month, I've been able to drive a very short distance to the beach, I'm back to doing my qigong exercises and best of all, I haven't felt the horrible aching swollen glands flu feeling for three weeks. And just that is wonderful, at least for just now.

(Plus I can still get lost in watching the patterns of light and water in the sky, without the danger of crashing into a pole!)

Here are some more links on this method that may explain it more clearly than I have: 

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